Renal consult
On Friday, her nephrologist came to visit her in Day Surgery after her left nephrostomy tube was replaced.
We learned more than we bargained for.
Although it commonly infects transplanted kidneys and post-BMT bladders, the BK virus doesn’t usually damage the native kidneys in after BMT. Teri is the unlucky one. Indeed, this virus is the sole source of her current problems including protein loss through the kidneys, resulting ascites (abdominal fluid) and leg edema, constant blood loss (and transfusions), platelet consumption (and transfusions), poor nutrition and low energy. Unbeknownst to us, 10% of BMT patients experience renal failure and undergo renal dialysis – removal of waste products via fluid exchange. The course to renal failure sounded inexorable. Dialysis usually begins at 10% remaining function and Teri is hovering at 20%.
Dialysis is given for 3-4 hours 3 times a week but can be given at home 5 days a week. So the Day Hospital of which Teri is so weary, may be simply traded for the Dialysis Unit, just as frequently. Travel is now limited by availability of dialysis units. International travel, a great source of mutual enjoyment, may be a thing of the past. Life is forever altered. However, one can live decades on dialysis. The possibility of eventual renal transplant is offered but the BK can be the bugaboo, again.
Urine for thought.
Crisis of quality of life
Teri tells me yesterday and Dr. H. today in clinic that she cannot go on suffering any longer like this – every other day in Day hospital, transfusion upon transfusion, pains from bladder spasms constantly – “with no quality of life”. She can’t go out, she dresses like a bag lady, she can’t eat, she can’t enjoy anything … she has no life. She wants to end it now. She is serious, forceful and adamant that it is her decision. I argue with her about coming this far and being so close to no avail. I talk about mind over matter. She says that the duration of this ordeal has cleared away her kick butt mind. I suggest that she needs to speak with her psychologist and Dr. H. before she makes any decisions. She agrees to that step.
In clinic, Dr. H. agrees with Teri and corroborates her lack of quality of life. He asks her to give him one more chance to improve her quality of life.
She listens.
Dr. H. has discussed this with the nephrology team and other BMT experts and feels that it is best her and her comfort to begin dialysis this week. This means fast forwarding to the total renal failure. This means they will kill her kidneys and in so doing finally kill off the virus because it is only trophic to the kidney and bladder tissues. Once the kidneys and bladder have become scar tissue, the virus has no lush tissue to infect. They can do this medically by embolizing it (putting gel in the artery) and infusing it with alcohol. It is painful so they plan to do an epidural (spinal) block as one would with delivery. It will involve putting another catheter for dialysis in her chest.
Teri agrees to give it a try.
She is relieved and regains hope of achieving pain relief and some measure of freedom from this morass. She hugs Dr. H. Dr. H. apologizes for all that she has been through.
THE ultimate trade off
Your survival for your life as you know it. In Teri’s case, your survival for the price of your organs. This is the hypothetical pact that I mused about in a past blog. What if you knew you could survive but the price was that you would not be the same person with the same organs, with the same cognitive ability, with the same sense of yourself.
We are sadly there.
Three nephews + Ben
Greg (sister Terri’s son - right), Michael (sister Anita’s son) and recently married Peter (brother Simon’s son - middle) all came and sanded, painted, vacuumed, mopped,, switched outlets, change bulbs, hung pictures, grilled and saladed for two days while Teri was in the Day Hospital.
Before arrival, we weren’t sure if they were going to be the Three Stooges or the Three Amigos. But after the place sparkled and was still standing, they earned the latter moniker. They went to eat and drink lowland gourmet beers at the Benelux (Belgium-Netherlands-Luxembourg) Restaurant. Unfortunately Michael got bit by fried cheese curds – “Welcome to Wisconsin”. Ben returned from picking Rachel’s (Eileen’s old car) 140K Honda Ciivic and finding lodging in East Lansing in Okemos. The now four Musketeers did a tour of the empty Pabst brewery but did taste a Pabst. Hmm, they sampled the culinary best of Wisconsin – brats, cheese washed down with beer.
Next step
We begin tomorrow. Teri will be readmitted.
As Teri faces a new round of challenges, she again needs your prayers and telepathic thoughts to help her get through the renal ablation and dialysis with healing and without complications. She needs it. She deserves it
Even some cards – your humor, insight and family stories – would help as she copes with another precipitous bump in the road.
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